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Big Birthday Incoming

30

Thirty

Dertig

Dreißig

Trenta

Trente

שְׁלֹשִׁים

No matter how I try to dress it up. 30 is happening. Two weeks today is my thirtieth birthday. Or in my dodgy estuary English accent, firty. Turning 33 will be a linguistic nightmare.

I’ve been thinking a lot about what this birthday means to me, if it means anything at all. It’s drilled in to us that turning 30 is a big deal. It’s a big birthday. But why? What will I be on the 10th July that I wasn’t on the 9th?

Is it because we’re programmed to think that 30 is the age at which one is properly an adult? That we’re supposed to have our shit together by 30? House in the suburbs, married, kids and a golden retriever?

Times change. Most of my friends don’t have children. In fact, looking at my closest circle, none of them have children. Those in relationships are in no hurry to get married. Choosing instead to enjoy hard-earned money on holidays and experiences. Singletons in no rush to settle down. I fell feet first in to my career but even if I hadn’t, I’m still young enough to start afresh and find something.

As for me. I don’t have children. I’m in no rush to have any, if any at all. I was asked recently by a woman at work, in a room full tired, stressed looking parents, what my secret was to looking young. Not having children, I joyfully chirped back. That and glycolic acid.

JP and I have been together just over 6 years now. We only lived together for the first-time last year when we purchased our flat. We clearly like to take our time with these things.

I don’t feel any pressure to do any of these things. Thankful to come from a family and be part of an extended family who put no pressure on us. No asking “when are you giving us a grandchild?” or other such questions that should never be asked.

I’m approaching 30 with my shit together. On paper at least

So why is 30 still such a big age? Why do I still feel like it’s supposed to be a turning point? Am I to wake up on my birthday and find I’m suddenly an adult? I doubt it, I’m going to be waking up at the happiest place on earth, Disneyland, where I can continue to live a Peter Pan existence.

What the thought of turning 30 has done for me though is that it’s made me question everything. The status quo and that’s never a bad thing.

I am deeply unhappy living in Aberdeen. What was supposed to be me living here for the 4 years it took me to gain my degree, turned in to me dropping out of Uni and now approaching 10 years here. I’ve put up with this without question for so long but now? Nah. Life’s too short to put up with this. So we’re working out where to go, what to do, when to make the move. I’ve always wanted to dye my hair some ludicrously unnatural colour, like pink. So guess what? A week after my birthday I’m starting the process to lighten my hair and will hopefully get my wish by the end of the year. Whilst fortunate that it pays well, I don’t enjoy my job. And my current questioning of the status quo has raised the question of am I happy to stick with my job? Is money everything? No. And no, but it helps. So I’m starting to think about dropping to part time, to give me the time to do something I enjoy. I’m a great believer that everyone has a marathon and a novel in them. I’ve done the marathon, so…? Questioning the status quo is always a good thing, but sometimes it takes something like a ‘milestone’ birthday to bring it about. So I will thank 30 for giving me the kick up the bum to get myself in to gear.

But 30 no longer feels like a milestone birthday in terms of achievements.

From speaking with friends and extensive research (ok, ok, I used google once), I’ve come to the conclusion that turning 30 is now more likely to be a time when people question the existential as opposed to the physical. What is my purpose as opposed to when will I pop a kid out. Questioning the norm. Termed the midilife crisis. Although if my arthritis and health continues to go on the way it is, it could well be a mid-life crisis.

Questioning who I am and the world around me is something that has been happening since I first got sick 2 years ago. My tolerance for bullshit, already incredibly low, became even lower. I suddenly didn’t have the time or the energy to listen to or engage with petty people and what they had to say. Living in Aberdeen I’m surrounded by the oil and gas industry, and am guilty of being part of it myself. Oil and gas has given a lot of people (perhaps not deservingly so) an awful lot of money. I work in an office of people who love nothing more than to show off with, especially with their cars. In work, in agony, close to tears, I shouldn’t have to listen to imbeciles whinging, close to a nervous breakdown, distraught about how a seagull pooped on their freshly cleaned car. Like seriously, get a fucking grip and stop being so pathetic. Some people have actual real problems. It doesn’t make me angry, in spite of how it reads, it just baffles me how people get so wound up about something that doesn’t even deserve a second of thought. Whereas before I perhaps would have listened, hmmed in all the right places and made appropriate facial expressions, now I just mutter something like ‘not good’ before proudly remarking that I’ve never washed my car because it’ll rain soon enough and that’ll wash it away. This is something that I’ll be taking in to my 30s with me. My zero tolerance for bullshit.

I’ve also developed zero tolerance for fakery. Fakery of myself even. I no longer feel the need to try and be something that I’m not, both physically and personally. Sure, I’m packing more pounds of weight that I’m currently comfortable with, but I feel so much less pressure to look a certain way the older I get. I’d always read it’d happen, you know when people asked to give advice to their 18 year old self, usually it’s “you’re not as fat as you think you are” but I’ve never really related to it until now. Christ, I thought I was enormous in my teens and early twenties. I developed an unhealthy relationship with both my body and food, despite weighing less than 110lbs. Always thinking people wouldn’t like me if I was fat. I’m a good 40lbs heavier than that now but you know what? I don’t hate myself and I actually think there are people out there who like me, just the way I am (feeling like Bridget Jones with that one). Hell, I even have a man who loves me no matter what. Who would never dream of putting me down, and who supports me when I try to eat healthier and move a little more. Even if he does encourage me to have that portion of sticky toffee pudding when I probably shouldn’t. (Jack, if you do ever read this, thanks for introducing me to sticky toffee pudding. Let’s go to Marks and Spencer and get some).

In my early twenties I wore clothes because I thought it was what I was supposed to wear. My go-to outfit for a night out would literally involve me wearing nothing more than a pair of knickers and a bra. Any photographic evidence that I have of this, and believe me, there is a lot, won’t be making an appearance here. But I no longer feel the need to fit in. I’m not somebody who will ever look traditionally sexy. I am cute and I am proud. I don’t wear jeans. I don’t know how to wear denim full stop, which seems to be the staple wardrobe of so many people. If I wanna wear Disney sweatshirts and animal print dresses then I’m going to. And I do. And I don’t care. I remember years ago reading in a magazine that women over the age of about 25 (I think) shouldn’t wear glittery nail polish. And I don’t know why but that’s stayed with me all those years. I love glittery nail polish. Why should I give it up at a certain age? For the record, I haven’t and I won’t. I always have glittery nails and will until the day I do. In the 10 or so years since I read that article I am at least grateful and thankful to be part of a generation who are sticking two figures up to the old established ‘rules.’ I’ll wear what makes me happy. It won’t please everyone, but these tend to be the same people crying because there’s a seagull within 200ft of the car, so their opinion is irrelevant. Life is too short to pretend to be something that you’re not. If my Instagram feed is anything to go by, everyone I know has recently been to see either Ed Sheeran or Beyonce. In years gone by I’ve listened to Beyonce (I WAS PROBABLY DRUNK OK) but I no longer need to pretend that I fit in. I’d rather eat dirt than listen to either of them. And that’s ok.

When I google turning 30, the internet is full or articles telling people (women I assume, I’m yet to meet a man having a breakdown over turning 30 or one jittery enough to google it) what they should be doing and what they should have.

A personal fave is from the Huffington Post, ’12 Financial Goals You Should Reach by Your 30s”.

“Your 30s are meant for building wealth, not digging your way out of debt” it proclaims. Actually, my 30s are going to be about taking even more foreign holidays than I already do (although admittedly I have no personal debt) and I’m always going to prioritise holidays over saving. I’m particularly enjoying point 2, “No more student debt”. Hey Huff Post, I checked my student debt amount a week ago and I still owe Student Loans England £14,000, despite the fact I pay a lot of money each month towards clearing the balance. So guess what Huff Post? Fuck you and your stupid rules. I’m going to be entering my 60s and still have student debt and I’m not going to care at all.

I guess that I’m going to be entering my 30s content with who I am but perhaps not quite so content with my surroundings. Still got some toxic people to say goodbye to, maybe a more enjoyable and fulfilling job to find. But I’m no longer sweating the small stuff (GOD I sound exactly like my Mother).

If you’ve made it this far then I salute you, but out of curiosity, what’s the one thing you’d like to go back and tell yourself?

I’ve written before about ‘Always Wear Sunscreen’ by Mary Schmich, immortalised into a song by Baz Luhrman, and I’m going to leave you with the lyrics posted here in

 

How to (unofficially) survive a sinus infection

How to (unofficially) survive a sinus infection

If you follow me on Instagram then you’ll probably have seen that I have a severe sinus infection.

It first occurred just after I started my cosentyx, and a quick read of the side effects shows you that sinusitis is pretty high up the list of things. Why are side effects never things like beautiful glowing skin or impossibly soft and shiny hair?

I’ve had sinusitis for over six months now. It has been unrelenting. Every time I think it’s getting better, it attacks me again with a vengeance.

I first saw a GP about it a few days after Christmas. As soon as I uttered the words “I’m on cosentyx” the tone of the appointment change. A quick check of cosentyx in the medical version of google and I’m told it’s a side effect. Get on with it. Just one of these things I’ll have to put up with. Trying to explain to her that I have been getting on with it but I’m here because I can take no more. Only to leave with no advice, no sympathy, nothing.

I continued to just get on with it as best I could.

But barely a day went by when I didn’t feel the symptoms. Painful forehead. Painful cheeks. Blocked nose. Headache. Earache. Sore throat. Sniffly. Runny nose. Sore nose. I knew it wasn’t a cold because even when auto immune supressed like I am, colds do get better. This wasn’t ever getting better. It was only getting worse.

2 days ago I was enjoying a nice weekend at home with my boyfriend, spending some time on the sofa slobbing out watching the World Cup. Out of nowhere, and I mean out of nowhere, I became so run down. All of the symptoms I listed above came on in seconds. I knew at this point I had to go back to my doctor and was lucky enough yesterday to get a same day appointment.

Being the pessimist that I am, I was expecting the doctor to fob me off like I have been all of the other times. How wrong I was. A quick inspection confirmed that I have been suffering with a severe sinus infection that I shouldn’t expect to clear for about 6 weeks. I returned to work after the appointment but the symptoms got the better of me and I headed home to rest, which is where I still am now. Feeling that usual guilt of wondering what colleagues think of me being off again, trying to rationalise it all with the knowledge that I am unwell and that I really do need the rest.

I woke up this morning with the worst skin and dry chapped lips due to the constant blowing of my nose. I described myself to a friend earlier as both feeling and looking like ‘day old bread’. Can’t wait to get better and feel better and look better. It doesn’t just happen by itself however.

So. I’ve decided to share with you my personal guide to dealing with a sinus infection.

Let’s get steaming

  • Great for both trying to breathe again and for sorting out horrible lizard skin. I use a toner tab from Lush and a few drops of eucalyptus oil. Add to a bowl, mix with a kettle full of water that has been boiled and voila. Don’t stick your head to close to the water, giving yourself a steam burn at this point really would be the worst. Head over bowl, towel over head, and breathhhhhe. I steam my face for about 20 mins and follow with a good moisturiser. Hot baths are also great. I’ve had 2 so far today and will have one shortly before I go to bed. Again, I add a few drops of the eucalyptus oil to the bath.
  • Nasal sprays are a godsend. You will fall in love with one. And as tempting as it is to stick it up your nose 100 times a day every day for as long as you live, this is not recommended. Don’t use one for more than a week. This is definitely a case of something where I should practice what I preach. It’s not my fault it feels so damn good! Sterimar is a great nasal spray and I know a lot of fellow PsA sufferers swear by the stuff.

 

Softly Softly

  • I love love love using Eucerin Replenishing Face Cream with 5% urea. This one is the ‘night’ formula which is a lot thicker than the day cream. A little goes a long way. It can leave skin greasy after it’s been applied but this is a small price to pay. (Side note, all Eucerin products with urea in worked wonders for my psoriasis so give it a go)
  • Egyptian Magic Cream. Sure, on the surface, it’s just a tub of very expensive Vaseline. But this is a life saver. I apply to the skin that’s been abused by nose blowing and to sore lips.
  • When everything starts to get better and skin is less sore, Origins Never a Dull Moment exfoliator gets you back to beautiful glowing skin. Plus it’s microbead free so seals and turtles benefit too.

General Points for Survival

  • See a doctor. I was prescribed antibiotics and a strong nasal spray. If you’re on a biologic like I am, check with your doctor if you can take antibiotics. I did not check this. I took my first two antibiotics yesterday, and then that evening took my monthly cosentyx shot as planned. With hindsight, probably not something I should have done. I’m taking antibiotics to fight infection before immediately injecting a drug that heavily reduces my bodies ability to, well, fight infection. Not my finest moment. Hoping that the antibiotics will still do the job BUT YOU MUST CHECK WITH YOUR GP.
  • Lots of rest. Recovery is quicker if you have a cat to keep you company and provide limitless cuddles. Dogs work just as well. My rest right now involves me in my dressing gown, laid out on my sofa, propped up by memory foam cushions and under a comfy blanket. World Cup on TV, cup of tea to hand, endless supply of chocolate buttons.
  • Painkillers. If you need ‘em, take ‘em. Right now my painkiller of choice is co-codamol. My sinus pain is most severe in my forehead and when it flares I want to bash my head against a wall. The co-codamol does a good job at relieving this. I hate people who claim that painkillers are bad. Who preach for you to not take painkillers. These are the same people who claim that things like biologics are poison and natural is best blah blah blah. If you need painkillers, you take them. Don’t listen to fake martyrs. I hate these people. I love tramadol. Life goes on.
  • Lots of water. I am powered by rooibos tea.

 

A bit like florals for spring, I’m sure my survival guide is literally ground breaking. The abused skin around my nose is already getting softer so by the time I intend to face the outside world I hope to be looking fresh and healthy.

If you’ve any advice and tips for how you survive sinusitis and other ailments, then please let me know. I doubt this will be my last bout!

 

Products

Toner Tabs https://uk.lush.com/products/spot-treatment/tea-tree

Eucalyptus Oil https://www.boots.com/botanics-aromatherapy-pure-essential-eucalyptus-oil-10ml-10031672

Eucerin Facial Moisturiser https://www.boots.com/eucerin/eucerin-top-10-favourites/eucerin-dry-skin-replenishing-face-cream-night-urea-with-lactate-50ml-10065361

Egyptian Magic Cream https://www.feelunique.com/p/Egyptian-Magic-All-Purpose-Skin-Cream-118ml?gclid=EAIaIQobChMInuGczLfg2wIVFrcbCh30uwYlEAAYASAAEgLrRPD_BwE&gclsrc=aw.ds

Origins Scrub https://www.origins.co.uk/product/15343/11869/skincare/cleanse/exfoliator/never-a-dull-moment/skin-brightening-face-polisher-with-fruit-extracts

Sterimar Nasal Spray https://www.boots.com/sterimar-stop-and-protect-cold-and-sinus-relief-20ml-10191795

 

 

 

 

 

MIA. My Self Esteem.

 

Self-esteem

[self-i-steem-]

Noun

  1. A realistic respect for or favourable impression of oneself; self-respect.

Has anybody seen my self-esteem?

Last seen around July 2016.

Belonged to a girl about 5’6”, size 8, usually wearing a cute dress, full fringe, lashings of black eyeliner and generally happy looking.

No?

No, I’ve not seen her either. She’s been missing for a while now.

When self-esteem disappears, where does it go? Is it gradual? Or is it there one day and gone the next?

I can pinpoint why mine started to disappeared. It went when my toes started to deform. When toes are bent due to dactylitis, like mine are, shoes don’t fit. Initially I could still wear a variety of flat shoes and boots. Loafers, sneakers, pretty pumps, these kinds of things. Shoes that I would happily wear with dresses. But as my toes started to become worse, I could no longer wear these shoes. A brand-new pair of Adidas Gazelles, bought in April 2016, didn’t fit by the June. My beloved and battered Fred Perry pumps were so tight on my new feet they would bring me to tears. I had no choice but to buy skechers. A brand and a shoe type I wouldn’t have given a second thought about before. But now they were the only thing that would fit (aside from my running trainers, but I was far too much of an emotional wreck initially to wear anything that reminded me of running). So, with black flat chunky skechers, suddenly my style changed.

My vast array of dresses got put to the back of the wardrobe. Why? Because not only was it easier and less painful to wear trousers and not tights (I live in NE Scotland after all, bare legs are for the foolish), I simply didn’t have any shoes to wear with them. Everything I wore suddenly revolved around the same, elasticated pair of black trousers, which I am still wearing today. Shirts for work, sweaters for home. Repeat until the end of time. My style of dress, which I so closely associated with my sense of femininity changed overnight.

All of my shoes and boots that didn’t fit got put in to the attic. I.e., every singly pair. If I couldn’t see them, they couldn’t make me cry. I have on many occasions walked in to a shop and gone to try shoes on. Believing that one pair will fit. Maybe a wide fit pair of pretty ballerinas? A pair of sandals for holiday? The answer every time is no. I have cried in shops more times than I care to admit to. So truly upset that not only do shoes not fit, that the majority of people would have no idea why. That when I say to people how upsetting it is, that they think I’m being petty.

But it wasn’t just how I dressed that changed. My style generally became more relaxed. And with that, so did my approach to personal care. I no longer wore my contact lenses, opting instead to wear my glasses because it meant that I didn’t have to bother wearing make-up and could just hide behind them. I stopped having my fringe cut in, choosing instead just to scrape my hair back every day. All of this coupled with a two-stone weight gain has led me to barely recognising myself anymore. The irony being that I had higher self esteem when I was covered head to toe in psoriasis.

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Same person but two very different people. Just 2 and a bit years apart, but worlds apart. (*must not cry looking at photo 1*)

Why should I make an effort? I wasn’t worth any effort. I’m still not sure how much of me is worth an effort.

Put simply.

My self-esteem became pretty darn low.

But why has my physical appearance had such an impact on my all-round self-esteem? Is it really a reason why I retreat further and further in to my shell with each passing month?

Why is my self-esteem so closely linked to how I look? If I had never had arthritis would I have continued to care for my appearance and I would have still had great self-esteem? Is it as easy as that?

I have my fair share of faults and flaws but I like to think as a person I’m pretty ok. I’m kind (although don’t tell anybody this, I have a reputation to uphold), I’m fairly affable and I like to think I’m the funniest person most people will ever meet.

Yet when I think of my own self-esteem I don’t think of these things, I see only what I perceive as negatives. Shy, reserved, fewer friends than I have unbent toes, a constant feeling of being left behind in life which surely must be my fault. Never feeling good enough, always feeling a burden. One of the biggest problems for me is a constant need for reassurance. I can never do things right. I spend most of my time locked away in my flat, not having the confidence to do anything. On a Monday morning, work colleagues no longer ask what I did at the weekend because they already know the answer.

One of my most favourite people in the entire world has a cripplingly low self-esteem. I have tried on many occasions to tell him that I think he is awesome, but I know it’s not as easy as that. And if it was, why can I not listen to my own advice? Why can we never see ourselves through someone elses eyes?

I have a postcard at home (which will eventually be framed, probably when I get round to it in 45 years time) that says “Love yourself as your cat loves you” and this should be my new mantra because Mo adores me. She loves me when I’m happy, when I’m sad, when I haven’t washed my hair for 5 days, when I’m anxious and well, she loves me no matter what. Apart from when I refuse to give her an extra serving of dreamies.

The internet is awash with people advocating ‘self-care’ but how effective is self-care when self-esteem is so low? Especially when self-care varies so much from person to person. The internet is also a reason why people, and probably myself included to some extent, have such issues. I spend a good 90% of my time at work aimlessly scrolling through Instagram, seeing everybody else’s great lives, but we all know of course that this is merely what the person wants you to see.

I have no real conclusion to this entry. It’s still something that I am trying to get my head around. My arthritis has changed so much for me physically and it continues to change me as a person. It continues to challenge who I think I am, to question my own self-worth and happiness, it continues to push me to my limits. Even now, 7 months in to cosentyx, 7 months of living an almost ‘normal’ physical existence, why does my arthritis continue to have such a hold on me?

Please somebody else with chronic illness tell me that this will get better? Or if it doesn’t, please tell me I will be ok.

When did life become so difficult?

But, as always, it’s not all doom and gloom.

I am due, at some point in the future, to have the surgery to straighten my toes. But of the three toes that I desperately need doing, I have so far only been approved for surgery on the one. I am forever hopeful that my surgeon will give the green light to have all of them done at the same time. I won’t know until my final consultation if the operation will allow or prevent me from wearing heels ever again. But I’m honestly ok with not. I wasn’t a prolific wearer of them pre-arthritis, and really, I just want to wear some pretty flats. I never want to wear those black skechers to a wedding (least of all my own) ever again.

In fact, the first thing I’ll do post-surgery?

Burn the shoes.

Number 1 On The Bucket List = COMPLETE

“You have brains in your head and feet in your shoes. You can steer yourself any direction you choose. You’re on your own and you know what you know. You are the one who’ll decide where you’ll go. Well, go forward, go forward. On to glory!”

Last Sunday I fulfilled a life long dream. I ran the London Marathon.

In the run up to the big day I was avoiding a lot of conversation about it. The odd photograph on Instagram here and there, but no writing. I had so many things that I wanted to blog about but I didn’t. Why? Well, firstly, I was very, very scared about what I was going to be putting my body through. This was my first marathon ever, which was scary enough, but add in my arthritis to the mix and I really did feel like I was dicing with death. People don’t tend to know that they have an undiagnosed heart condition until it’s too late after all. But I also didn’t blog because I am always very aware that just because I can do a marathon with arthritis doesn’t mean this is the norm. I suppose part of me didn’t want to be ‘rubbing it in’ peoples faces.

However.

I feel like this might be the longest blog post I ever publish so get the kettle on and settle down.

In The Beginning

This journey begins in the 90s. Little Rebecca, sports mad. A talented school athlete. A lover of watching the marathon. Little Rebecca knew that one day she was going to run the London Marathon.

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I’m sure we all know what happens between then and April 2016. I continued to be sports mad. I would travel the UK and Europe to watch football. I never found a sport I didn’t enjoy. I grew taller. I went to university. I became lazy. I start running. Life becomes very good again. My health improves. I become fit. I lose some much needed weight. My mental health becomes the best it has ever been. My confidence generally is sky high. I fall head over heels in love with running. I run and then one day I can’t walk. I stiffen up. I can’t move. I’m swollen. I’m in pain. Turns out, I have psoriatic arthritis. I sink in to a deep depression of which I can’t see how I will ever get out of it. I can’t even walk from one room to another, let alone run. Life becomes dreadful.

However. I don’t know when I’m beaten.

The Build Up

On the 15th August 2016 I applied for, and was given, the marathon place from Arthritis Research UK. Looking back now with hindsight, what a really really really stupid thing for me to do. This was still 2 weeks before my official diagnosis at hospital, I was medication free and flaring badly. But I clearly had the naïve belief that I would be ok and up and running again one day. I took a charity spot because I knew that I had to run London. There was no other marathon that would do. I didn’t want to enter the ballot and not be successful. I needed to know I would be running. Which was a sensible idea because I haven’t received a ballot spot in the 4 years I’ve applied. Plus, it’s always nice to raise money for charity, and ARUK were a charity who I suddenly and unexpectedly had a very personal connection with.

Come the day of the 2017 marathon I was unable to run and had to defer my place (See here for how I felt that day and also some cracking photos of me in a hat: https://sensibleshoes.blog/2017/04/23/the-london-marathon/ ) I was failing spectacularly on methotrexate. Heavily reliant of diazepam to try and control the pain and spasms I was having in my neck. This was probably the worst month I have ever experienced with arthritis. This would continue until I started sulfasalazine. Which I had such a severe reaction to I was taken off after only 6 days. 3 more months of being in a flare and medication free would follow until October 2017.

Enter cosentyx. The injections worked instantly.

In the November, I would run my first 5k in a very long time around The Kelpies. It would be slow but steady. I would get round the entire course without stopping in 40 minutes. My body felt strong and I had no negative repercussions over the next few weeks. I would boldly declare this the day that the marathon comeback started.

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Only it wasn’t. I wouldn’t run again until February. I would have toe surgery in the January that would prevent me from doing any exercise. I tried to keep moving and so walked 1 mile every lunch break. I still felt quite fit. But fit enough for 26.2 miles? HELL NO. I also didn’t do a lot of running because I am inherently a very lazy person and don’t need an excuse to stay home in my pjs and just read. But mid February I did start going out a few times after work. The odd 3km. Maybe a 6km if I was feeling good. Saving a 10km run for a Sunday.

I combined the running with a lot of walking but I felt ok in the days after. No joint pain, no swellings.

But it wasn’t all good. My longest run was only 6 miles. All of my training runs combined only came to 32 miles. This is 100% not advisable in any way.

The last few weeks have been some of the most difficult of my life, physically and mentally.

My decision to run the marathon was one that truthfully, I didn’t really think through. When I was first diagnosed with arthritis, I was so angry that it had robbed me of my ability to run. To do something that I loved doing. It destroyed me. Pre-arthritis, my body was strong enough and I was fit enough to be working towards a sub 4-hour marathon. I knew that my first marathon would have to be London and I knew that it wouldn’t be my last.

But obviously, we all know what happened.

Overnight, I was left devastated by the fact that my body had given up on me.

Overnight I had become disabled.

Even though I could barely walk, I still believed that one day I would run again. That one day I would run the London Marathon.

With the benefit of hindsight, this would be one of the most naïve moments of my entire life.

Over the last four weeks though, I have struggled with the enormity of what I am about to do. I would cry at any given moment, overcome with fear that I wasn’t ready. That my body wouldn’t get around the course. That somewhat morbidly, I wouldn’t survive. I was quite literally sick with fear. I would sit up all night worried about what would happen. On numerous occasions I decided that I simply wouldn’t bother competing. After one particularly arduous 6 mile run, Jack said to me “I feel like you’re not enjoying running any more. Are you?”

And the answer was no. I wasn’t enjoying it. Every short run was fraught with fear that I was making my body worse, and let’s be honest, I probably was. My left knee was causing me so much pain that I didn’t know what to do. But as I kept reminding myself, I needed to do London. For me. I needed to know that I could still do it. That the arthritis that has so ravaged my body and my life would not win.

I needed closure.

And with that, I promised Jack that I would never run again after the marathon. I feel okay with that.

The pressure continued to build. I developed a very good relationship with the team at Arthritis Research UK and we agreed that they could share my story with the local and national press.

First up came the local paper, the Evening Express:

https://www.eveningexpress.co.uk/fp/news/local/north-east-woman-to-run-london-marathon-after-doctors-told-her-she-may-need-wheelchair/

The day after this was published I went to the local radio station North Sound One to be interviewed:

https://planetradio.co.uk/northsound/local/news/aberdeen-woman-battling-severe-arthritis-taking-on-marathon-challenge-2/

My interview ended up being played on every hourly news bulletin. Work colleagues were asking for autographs. I became very aware that there was a lot of expectation on me to complete the marathon, a lot was riding on me delivering.

Then came The Scottish Sun:

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And so the anxiety grew. I had so many sleepless nights. I would cry repeatedly throughout the day. I lost nearly 10lbs in weight because I was constantly being sick through fear. I couldn’t do it. I wasn’t ready. My body couldn’t do a marathon. I was going to drop out, I could feel it. I would never live it down.

The week of the marathon arrived. Then came an even bigger blow. My employers, who prior to this had agreed to match my sponsorship, suddenly declared they wouldn’t be making any kind of contribution. I had been quite relaxed about my fundraising until this point because I knew that I would be matched. Now, with a week to go, I was up a creek without a paddle. This is still an issue that I have a great problem with and I’ve escalated the matter up to senior management and will continue to do so until they keep their promise to me.

Oh. Did I mention that London was about to be in the grip of a heatwave?

Friday 20th April 2018

On the Friday, to London JP and I went. Anxious but I felt surprisingly calm. There was to be no going back now. At the airport I learnt that I would be one of fifteen running because they had arthritis. It kept things in perspective about why I was running. I never thought I would have this opportunity. I was now just 48 hours away from it. I was doing it against the odds.

The Expo at the Excel center awaited. The DLR rammed full of other people off to collect their race numbers. Silently sizing everyone else up “I’ll beat him” “I bet she’s fast”. I wonder what people thought when they saw me. Were they sizing me up? Slim, looks fit, bet she’s done this before. But nobody knew of course just what’s going on with my body. And I too didn’t know what everyone else was going through. How many others were there overcoming their own hurdles and personal struggles.

The expo I did not enjoy. I felt like a complete fraud. I can’t run a marathon!! These people are actually running  it. I just want to complete it. People at the stands trying to get me to sign up to various exotic marathons around the world. PLEASE STOP ASKING ME I CAN’T RUN A MARATHON I DON’T BELONG HERE. Forgetting of course, the whole reason why I was there was because of a marathon. I did however see Paula Radcliffe.

Fun fact about me. I am in love with Paula Radcliffe. I met her in Glasgow in October 2015.

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Let’s just take a moment to appreciate how fit and toned my body is here. SIGH. I had just run 10k. I was probably quite sweaty and smelly but she was far too polite to say so. I went up to her and I found myself stroking her arm. Not just a light brush. But caressing her arm. I can’t tell you just how unbelievably lovely she is. So it was a lovely surprise to see her in London and to be so close to her again.

The restraining order has clearly been lifted.

What I did enjoy about the expo though was the shirt printing station. I had known for a while that I was going to have an additional message on the back of my shirt and now was my opportunity. This would turn out to be the best £14 I’ve ever spent on running. Even though they didn’t include the apostrophe I so clearly added.

Something that they don’t tell you about marathons though (and if they do they should bloody shout it louder) is that you will be absolutely SICK of pasta. I was eating so much pasta that I got to a stage where I couldn’t chew it anymore. I was shoveling it in my mouth and it was going nowhere. It was pasta puree, like baby food, just falling out of my mouth. I have never been so attractive.

Saturday 21st April 2018

So came Saturday. The day before Sunday. The day before the marathon. Nerves quite high. But also I felt quite content. The weather was lovely so we decided to go for a walk. After a quick pit stop at the National Gallery to see my favourite painting of all time (FYI, Whistlejacket) we went to my happy place to avoid the marathon pressure. Somewhere that holds so many happy memories for me, Going as a child with my parents and my sister to feed the ducks. To hunt for squirrels. To play and laugh and have fun.

We went to St James Park. AKA THE END OF THE MARATHON. I wasn’t escaping the stress, I was willingly walking right in to it.

More pasta puree was consumed and that nights sleep would be one of the best I had in a while. I didn’t wake numerous times. I fell asleep and I stayed alseep.

Race Day

6am alarm. 2 slices of toast a mouthful of cereal forced down. Everyone at breakfast all there that early for the same reason. We’re all about to undertake 26.2 miles on the streets of London. And just like that, we’re off towards Brixton tube station.

Before I even know what’s going on I’m in Greenwich. Walking along Greenwich High Road, a road I know well, on my way to the park. Suddenly I remember why I love races. We’re all in this together. There’s a great sense of expectation. The sun is shining. JP walks me all the way up to the entrance of the race pens and I realise, I don’t feel scared. I don’t feel nervous. I am excited. I know I can do this. I know at some point later that day I will have done it.

I met up with a lot of fellow Team A runners and there’s a great sense that we really are a team. I’m not the only one running this with arthritis and that’s reassuring. A quick trip to the toilet for a last minute wee and I’m off to my pen. I put in such a slow estimated finish time I’m in the last pen with the fancy dressers. It’s not even 10am yet but it is absolutely scorching. As I do though, I get talking to everyone around me. We all share that same feeling of the unknown, not knowing what’s ahead of us, but we all know we’re gonna take our time to make sure we get round safely. Chat turns to training. How far did you go? People start to sound worried when they share that their longest run was only 19 miles. 16 miles. I say “I’ll make you laugh, my longest run was 6 miles”. Cue laughter from everyone, a chorus of “yes that does make me feel better”, before they realise. I’m telling the truth. Yet at this particular moment, just minutes away from The Queen pressing the start button, I know I am ready.

ANDDDDD WE’RE OFF.

Only I’m not. And it will take something near to 53 minutes before I cross the start line (I wasn’t joking when I said I was at the back).

“Whatever you do. Don’t set off fast. It’s slightly downhill, it’ll catch you out. Pace yourself”

I’m running. I’m running the London Marathon. Oh and I’m walking. I’m walking the London Marathon. I am here. I am doing this. This doesn’t seem real.

I’m passed by Mr Bump. A full pack of Pink Lady Apples. A man with an inflatable T-Rex suit on. A dalek, complete with sound effects. 3 rhinos.

People passing me gently squeeze my arm. They’ve read the message on my shirt, they tell me I’m inspirational, I’m so brave, that I am amazing.

At mile 3, the shirt did something I never expected it to do. A man ran up to me and told me he too had arthritis. We get chatting (honestly, I can’t stop talking) and he asks if he can run with me. And so, for the next 8 miles, Phil becomes my new best marathon friend. He realises pretty early on that I am very bossy, but he’s too kind to say anything. I try to pass this off as being some kind of motivational runner. But really. I just love the sound of my own voice.

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When we passed the Cutty Sark, I knew that I was about to see JP. I see him and off I sprint. We hug, I start to have a few tears. I take a terrible selfie that will never see the light of day, and off I go to the Arthritis Research cheer squad a few yards up. I make a very literal song and dance about this, twirling my way up to them. And off I go again.

And then I see her. Rachel. My Sister. I didn’t expect to see her for another 7 miles. And so begin the waterworks. I literally cannot stop crying (if you zoom in you can see a single solitary tear dripping down my cheek. I assume the others quickly evaporated in the heat.)

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But the marathon waits for no cry baby so off I go again. Come on Phil, we got this! The heat increases. By this point I’m pretty sure Mo Farah has finished. A friend of Phils lives at mile 8. He comes out to see us with bottles of frozen water. I’ve never known true love quite like a bottle of frozen water against the back of my neck. At mile 11, I don’t quite know what happens. I am running followed by walking, and I turn around, and Phil has gone. I don’t know where has gone. I feel really very bad but I have to keep on going.

The crowd deserve a very special mention at this point. Along the entire course people of all nationalities, ethnicities, religions, sexuality, walk of life and more were all united by the marathon. When water was scarce on the course (which was alarmingly frequent) people were attaching hose pipes to their kitchen sinks to fill our bottles. Running out with jugs to top us up. People offering us suncream. Ice lollies. Sweets and food. So many people cheering us on by name, having some banter. They were unwavering in their support.

Half Way

Tower Bridge. That wonderful London icon. This is the point where most people get emotional. Not me. I didn’t see what the fuss was about. The thing about Tower Bridge is that it is best admired from another bridge. But hey, I ran it. It was cool.

I cross the half way point. I am now in completely uncharted territory, having never run above 13.1 miles before. But I feel very, very good. I know at about 14 miles to expect JP, Rachel and her boyfriend James, and this keeps me going. Like a mirage on the distance, I see them.

More tears. We all agree I look fantastic. If not slightly sweaty. I mutter the words “I FEEL GREAT” and off I go. I will regret this statement in just 3 miles time.

Mile 17. The right knee starts to hurt. Like, really hurt. I am by this point doing a lot more walking than I am running. People around me are dropping like flies in the heat. Canary Wharf. Now THAT sets off the waterworks. A building I so closely relate to my childhood (I don’t know why either so don’t ask) but running towards that magnificent beast really got me emotional. But still the knee hurts. I have to keep going. 20 miles. The pain gets worse. But I have to keep going. Go forward, go forward, on to glory!

At mile 21, the cheer squad has increased one, by the arrival of Max, who’s birthday it happened to be. Max has been my dearest friend since we met at university almost 10 years ago and I love him to bits. Somehow a sign has appeared! Wow! They made me a sign!! I will learn afterwards that they found this sign discarded on the ground, but as I happen to be Miss Becca, they took the sign as a sign they were meant to find it. More tears. I have lost so much fluid through both sweat and tears.

The Knee

I don’t know how I do it, but I find myself at 24 miles. Time has gone alarmingly quickly. And then it happens. The knee. It twists. I want to cry out. I want to be sick from pain. But I can’t. I am within touching distance of the finish now, I have to keep moving. It all becomes a blur from here on. I spend about a mile walking with a fellow Team A runner Hazel who fills me with the encouragement I need to keep hobbling.

25 miles.

Buckingham Palace. The cheer squad for the final time. A tap on the shoulder from a fellow runner. “I have arthritis too, I just want to say I love your shirt.” We get talking. 400 meters to go. I tell her I have to run this part. I have to run across that line. I do.

I cross that line.

I completed the marathon.

The girl I just met also crosses the line. She cries. I cry. I ask if I can hug her and she says yes. We realise at this moment we ‘know’ each other through a facebook group for young people with arthritis ‘Arthurs Place’. Frederica. Rheumatoid arthritis warrior. We had connected for the first time the day before, and by the powers of the universe, we ended up crossing the line at the exact same time.

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And off I hobble to St James’ Park to meet the squad. I can’t support any weight on my right leg now. It is a buckling mess. I realise at this point that my complete lack of distance training was the best thing I could have done. Or not done as the case may be. If I’d have done 20 miles in training, there’s a high chance my knee would have gone and I wouldn’t have been able to take part. See. Always method to my madness.

The real tears start. The uncontrollable sobbing. I am OVERWHELMED by messages from people. Friends old and new. Strangers. Work colleagues. Long lost loves and worst enemies. There isn’t a single person who at that moment in time I don’t hear from. I am lost for words. I was told I would never run again and I just completed the marathon. I phone my beloved Mum, who hears me cry out the words that I did it. Cool as anything she simply says “Well done, I knew you would do it”, and she did. I can never admit to her that she was right, but she was.

I can’t stand up. I can’t walk. I have to be supported pretty heavily with a person either side of me. But it’s ok. I can take this pain. This is a pain I never thought I would experience. A pain that tells me I achieved the unachievable.

It occurs to me that I haven’t had a wee in over 7 hours (we’re all friends here). This is probably the longest time in my entire life I have gone without. I am affectionately known as wee-wee head, due to my drinking 4 liters (minimum) of water every day. It will take me about 6 days to properly re-hydrate myself again. It will take me a week to truly appreciate what I have achieved.

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The Aftermath

And just like that. It’s done.

I promised the world that I would never run another marathon.

I instantly take it back.

I want to do it all over again. Not at that very moment admittedly. But next year. Every year my body will allow me. I’m going to run it again.

Best marathon friend forever Phil reaches out to me on facebook. I am overjoyed. We both survived the greatest test we’d ever faced and made a friend in the process.

The next few days pass in a haze. My knee is very bad, and even now, is still excruciating, but I have that same naive belief it will get better. I returned to work to be met with high praise and admiration, even by those who doubted I would do it beforehand. The sponsorship money rolls in. The support makes me emotional again.

Whilst I am no longer an official Team A member, my work with Arthritis Research UK is hopefully not finished. Ive been trying to convince them to put me in TV advert so that the world can see my beautiful face. I’m not sure if they think I’m joking…..

The Future

If you have made it this far, I salute you.

In a few days time I am back in hospital for toe surgery. No running for a few months. The next challenge is The Great North Run in September. Given how good I am at just winging it, I probably won’t start training until the day before.

I still don’t think what I have achieved has fully hit me yet. I don’t know when the reality will hit me. It’s coming in drips, but the enormity of it is still to come.

My marathon of 26.2 miles might not be everyone’s marathon. Just walking 500 meters will feel like the same achievement for other people. But two years ago, and even a year ago, I lost that belief that I could do this. I never thought I would do it. I gave up. In my lowest moments I never saw this day happening. And whilst I’m not saying that everyone has a marathon in them, I do know that arthritis doesn’t have to rob you of everything. I want to tell you all that there will be better days. That those hopes and dreams you feel have been taken from you are still there to be yours. Never, ever stop believing like I did.

Final Thoughts

Of all the photos that got taken through the day, this one is possibly my favourite. Sure we might be looking in different directions, but I can feel the love between us. I honestly wouldn’t share wearing a medal with anybody else.

If you have a sibling who you don’t look particularly similar to, take some comfort from the fact that despite having no resemblance to the other, Rachel and I are in fact 100% full sisters.  She, tall and willowy with curves in all the right places, a delicate bone structure and a figure to die for. Me, short, stumpy, big round face, body of a pre-pubescent boy, the spitting image of our Chinese Grandad when he was 60 years old.

But she is my squishy. My number one supporter. She will be well chuffed that I’ve written about her.

Thanks Squish. I love you.

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Support Groups

I should start this post by saying that it is very much intended to be tongue in cheek and is based on my own observations, although I have no doubt that most of these are recognisable to anybody who’s a member of a health related facebook group.

Support groups have offered me just that. Support. I have only very briefly met one other psoriatic arthritis sufferer, an amazing guy called Paul who works at The Hydro in Glasgow, and who kindly moved my Mum and my seats for Black Sabbath to the accessible section when he saw that I was struggling up the one million stairs. Top Bloke. So support groups, linking people together when the otherwise may feel quite isolated is great.

They do however also drive me absolutely nuts at times.

So today I introduce to you:

The 5 People You Meet in Online Support Groups

  1. The Attention Seeker. This person posts things that are usually unrelated to any kind of health condition, and is probably the same person who posts on their personal facebook “OMG can’t believe it” What’s wrong? “Can’t say on here hun.”. They post a few times a day. Things like “OMG I can’t believe I forgot to put sugar in my tea today, what am I like”. Thanks so much for sharing with us all your truly terrible ordeal Susan, sending thoughts and hugs your way during this difficult time. These people are the ones that drive me the craziest and I block the worst, most annoying offenders.
  2. The ‘I have it worse’. Whilst this person does exist in the world of arthritis, in my personal experience, this type of person is the absolute worse when it comes to psoriasis. “You have like two tiny spots, 234674% of my body is covered”. These kinds of people. Can’t offer any kind of advice without telling you theirs is worse. I always find their comments quite spiteful and feel that they are both trying to undermine the original poster, and also win at life for having it the worst. They are the real life psoriasis version of The 4 Yorkshire Men from Monty Python. And I hate them. The people. Not Monty Python.
  3. The ‘I can’t be bothered to google’. These people are very closely related to The Attention Seeker, and they can be hard to tell apart, expect that this person tends to post more on topic. But posts about things that google, mediation information leaflets or you know, their doctor, could answer (but why do that when you can get attention online! See. Closely related). “I took 2 paracetamol this morning, can I take 2 more tonight?” “I’ve been struggling to breath and have tight chest pains and I coughed up a lung earlier, any ideas what it could be?”. Nah, no idea. You tried google?
  4. The Joker. The joke teller. The meme poster. Loves a quote of words posted on a picture of a Minion. Trying to keep the spirits of the group up when all we want to do is roll around in deep heat and cry. I applaud them for their optimism. But they still drive me nuts.
  5. The Superstar. The person who knows the right thing to say. Who knows the answer or knows where to point you in the right direction. Full of reassurances and level headed. Knows the best products to buy and try and what to avoid. Can always be relied on no matter what question you posed. Every group has a few and they also happen to be my favourite people in the group.

Special shout outs to the runners up.

  • The Childs Farm advocate. No the cream didn’t cure or clear your psoriasis. It’s just a moisturiser. I bet the Child’s Farm marketing team can retire now thanks to you all.
  • The cbd oil potential user. I think we’ve all seen enough to know that the one from Holland and Barrett tastes like poo. And no, it’s not good enough to help you.
  • The over-sharer. Shares every intimate detail of their life. Probably the same person who posts hundreds of daily photos of their toddler potty training on their personal facebook page.

Who have I missed out? I’m sure that there are probably 50 types of people you meet! Let me know who I’ve forgotten and who your favourite is!!

The 5 Things I Want Others to Know About Living With Arthritis

The Easter weekend is here!

Although I’m not that excited as I’m working both today and Monday because I’m all about the money and I’m not allowed chocolate cos my body continues to reject a growing number of foods. JOYOUS!

On Wednesday I was asked:

“What’s the one thing you want other people to know about living with arthritis?”

One thing? THE ONE THING? I have so many things I’m legitimately tempted to jot it all down in a novel.

Where does one even begin with that?

Turns out, I had no idea where to begin with that. So I threw it open to the wonderful internet to try to gauge what the most popular ‘one things’ were. Turns out, we all have thousands of things we want the world to know.

So, being someone with a total disregard for rules (sorry Police Officer Parents, it’s nothing personal) , I decided to narrow it down and submit 5 things.

So ladies and gentlemen, today I present to you:

The (simplified) 5 things I wish people knew about living with arthritis

  1. That arthritis doesn’t just affect old people. I was 27 when I developed and was diagnosed with Psoriatic Arthritis, which isn’t particularly young (e.g. infants can suffer from JIA) but I still had a hard time convincing those around me that yes it was arthritis and that no I wasn’t too young. If I had a pound for every time someone said, “Nah, you’re wrong, it’s not arthritis, you’re too young”, I’d be a millionaire.
  2. That there are numerous types of arthritis. My type, psoriatic, is not osteoarthritis, which tends to be what people think of first. It’s not wear and tear in my case, but autoimmune. This leads nicely in to point one as well, associating arthritis (especially osteo), with being something that only old people have.
  3. There is more to it than ‘just’ sore and swollen joints. Fatigue is a very real and very debilitating associated side effect, and can impact on every part of your life. Having to lie down out of exhaustion after doing something as ‘simple’ as brushing my teeth has happened to me.
  4. That people who live with arthritis look like everyone else. That you can’t tell just by looking at someone how much pain they may be suffering. The joys of having a relatively invisible illness!
  5. “But you were ok yesterday” is not something anybody with arthritis wants to hear. Sure I was ok yesterday, but since then I’ve flared up. A flare occurs when symptoms of a disease that has been present for a time suddenly worsen. I don’t know if or when I’m going to flare, there’s no rhyme or reason to why it happens. So thanks for noticing I was ok yesterday, now notice than I’m not ok today and let’s move on.

Now with the benefit of hindsight I wish I’d also mentioned how nothing I did caused this. “If you’d never drunk milk this wouldn’t have happened to you” is a personal fave, closely followed by “If you become vegan now, you can reverse it”.

Despite submitting the piece, I am still unsure what my number one thing is. So many different points link in to each other it’s hard to tell where one point ends and another begins. As I sadly continue to age I feel that the age point becomes less relevant to me (damn you the passing of time!) although at my time of diagnosis it was probably the biggest difficulty I faced when telling people.

So. What is the one thing you want to tell people about living with arthritis? How many thousands of things do you have to say!

 

 

 

Psoriasis Update

I meant to post this about 5 weeks ago but I clearly didn’t. I don’t really have any kind of excuse why. Apart from I was probably napping and life got in the way I suppose.

I’ve been super poorly with 5 bouts of sinusitis in 5 weeks, which let me tell you is bloody miserable. I would be fine and dandy and then literally out of nowhere, I felt full of ‘cold’ symptoms, but without actually feeling like I had a cold. A few sporadic days off work. And then, as quickly as the symptoms came on, they’d disappear again. Only to return just a few days later. Repeat for 5 weeks in a row. One day life is going to give me a break.

I also went to Iceland for 4 days which was good because holidays are my favourite thing in the whole wide world. Saw some waterfalls. Saw some volcanoes. Suffered from sniffly sinusitis. Saw some more waterfalls. Also saw the Northern Lights though which was pretty super. Another thing to tick off my 30 things before 30 bucket list.

 

Although if anybody reading this has been to Iceland when in an arthritis flare can you please let me know your experiences because my impression of it from a disabled point of view, Reykjavik especially, was not positive and this was reinforced when I was speaking to a woman in a wheelchair who seemingly had had a terrible time of it. So I would be genuinely curious to know what others thought of it.

I also started running again and training for the dreaded marathon. 33 days to go FYI. Link to why I’m running is below:

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?pageId=823987

Anyway, I digress.

I started writing this post when I was scrolling through instagram, and noticed quite a few of the accounts I follow had posted that a lot of photos tagged #getyourskinout had been removed due to them violating the community guidelines.

There is nothing about these photos that breaks the rules. They are often very personal photos, posted with immense courage by people who might otherwise be too embarrassed to share with the world just what their psoriasis looks like.

For the record, I have never once been embarrassed of my psoriasis. Sure, I hated it with a passion (mainly my scalp) but I never hid it away. I went on hot holidays and got my skin out in swimwear. Bare legs. Bare arms. I often wore sleeveless shirts to work without a care in the world. I was often praised for this, which whilst I appreciated (receiving compliments is second only to my love of holidays) I also felt baffled by because there should be nothing to compliment. It’s just arms.

So back on whatever day I first drafted this post, I decided to reshare a photo of my legs, covered in guttate (caused by sulfasalazine, but that’s a whole ‘nuther blog post), alongside a photo of my legs as they are now. My legs (and scalp, and arms, and tummy, and boobs and bum and face and well, ALL OF ME)  have been completely changed by cosentyx. No psoriasis. A wee bit of scarring but who cares. I certainly don’t.

I wish I had taken more photos of my psoriasis in the days and weeks after I started cosentyx, but it really did happen so rapidly it was too overwhelming. I think I have been completely clear for 5 months now. I still sometimes gaze down at my arms to check how bad they are only to be met by clear, soft, skin. I still occasionally scratch my scalp, expecting to feel something, almost wanting to feel, scratch and remove the plaques, and I’m still baffled that there is nothing there. Having my first haircut psoriasis free made me cry. That was how much of a big deal it was. I sat in the hairdressing chair and I was so overwhelmed by what was happening all there was to do was cry and hope that my muffled words of “just a trim please” was not swallowed up by tears. Thankfully I didn’t turn out bald so she must have got my drift.

Enough bumbling on from me. Spring has almost sprung. The days are getting brighter. I am looking forward to a great week ahead, finishing it off with a few days in Edinburgh where I am hopeful I will be able to do something that I love that I haven’t done in almost 2 years……dance.

To be continued.

Hospital Anxiety

I hate hospitals.

I hate going to them even more.

I hate not knowing what I’m going to hear. Not knowing if I’ve gotten progressively worse. Not knowing what to expect. Not knowing if I’m going to see the nice side of my specialist or the nasty side. Not knowing if I’ll cry. Not knowing if I should go alone or if I should take support. Not knowing what’s to come.

I hate everything about them.

So if you couldn’t tell where this post was going…today I had my first appointment with my specialist since I started cosentyx.

I spent the day at work writing, then re-writing, lists of the positives and the negatives. Scared that I’ll forget something, that I’ll retreat in to my shell and panic and not know what to tell him.

Positives

  • Clear skin
  • Less stiffness
  • More dexterity in some fingers
  • Almost walking normally
  • Fatigue levels manageable
  • Green light from orthopaedics about having my toes straightened
  • 5 toes have had work on them in minor surgery, just the 5 to go.

Negatives

  • Perpetually full of cold
  • Ankle continuously swollen
  • Knee becoming swollen
  • Some fingers still so bad I swear they’d feel better broken in two
  • An elbow that has started to refuse to move
  • Anti-inflammatories not working
  • Orthopaedics will only operate on me when I can prove that my symptoms are under control. Which they’re not.

Do I go alone? I’ve always found my specialist was less of an asshole when I went alone. But if I go alone I’m liable to forget most of the things he tells me. If I take someone with me, then at least that person can listen and give their opinion on how the appointment went afterwards and tell me any key points that I might have missed. But on each occasion I have taken someone with me, Dr Evil has been vile and I’ve ended up in a heap of tears every time. What if I have to go for testing and x-rays and all manner of procedures and I’m by myself? If I ask for support, does that make me weak? If I expect support to be given without asking, am I being needy?

So I went alone. Not least because it’s a logistical nightmare trying to leave work without leaving too early and then picking up my hospital buddy and driving there and getting parked and oy the struggles. But also because each time I go alone I get a little stronger. At least this is what I tell myself. I am an adult. Adults do things alone. Adults don’t always have the support that they might want. Adults can go to appointments by themselves and cope.

But adulting is very hard.

I spend far longer worrying about how the appointment will go, and what the potential outcomes of each imagined situation will be than in the actual appointment itself. I spend too much time worrying that I’m not sick enough to warrant the attention. That maybe the symptoms are still in my head as he made me believe for so long. That maybe those fleeting, infrequent new symptoms are the M.S I’ve been warned about. That it could also be fibromyalgia. That my inability at the moment to process food is caused by more than just a psychological worry. That maybe I am the problem. That maybe there are lots of problems.

I worry immensely about that dreaded weigh in. As someone who has always had problems with body image and weight, getting told what I weigh is hard going. I don’t weigh myself. If I don’t know how much I weigh, I can’t obsess about it and adjust what I eat, or don’t eat, accordingly.

But I keep those worries to myself. I’ve been told off one too many times at the hospital for talking about things my specialist doesn’t care about. That numbness in your hand? Not interested. The fact that sometimes you can’t remember how to spell your own name? Definitely not interested.

The appointment today?

It went….well. Although the nurse didn’t listen to me when I asked her not to tell me what I weigh. I am officially the heaviest I have ever been. This is hard to deal with and will take some strength to not act on. Like Ross Geller in Friends before me, when asked how much he weighs “I’d prefer not to answer that right now, I’m carrying a little holiday weight”.

I have the green light for surgery. It took a lot of strength not to cry at hearing this.

My inflammation levels are no longer alarmingly high. Just high. Which is good. Increase some meds and it should continue to subside.

“Keep going as you are, I’ll see you in 6 months….You even look like you’re doing very well Rebecca”. Words I never thought I’d hear him say to me. My specialist was almost nice to me.

The anxiety has gone…for now. Only to reappear when the next appointment letter comes through my door I am sure.

But right now?

My bags are packed. My flights are booked. I’m going home for a few days to put my worries behind me. To spend some well deserved time with my Sister. To give my city, the city that made me, the love it deserves. To spend a few days being me. Just me.

 

The Greatest Instrument You’ll Ever Own

“Enjoy your body
Use it every way you can
Don’t be afraid of it, or what other people think of it
It’s the greatest instrument you’ll ever own”

I sit here, at my work desk, listening to a song that I haven’t listened to in a very long time. A song that has stuck with me for nearly 20 years, Baz Luhrmann: Everybody’s Free (To Wear Sunscreen), the lyrics of which came from a 1997 column written by the journalist Mary Schmich.

I have had a life long love hate relationship with my body. Your body is one of these things you take for granted. We all do. It’s something you never really, truly appreciate until it’s not the same anymore. As with most girls, I wasn’t exactly a big fan of my body when I was in my teens. I have starved my body beyond any recognition. I have abused my body in more ways than I’m currently strong enough to admit. I have purposefully hurt myself. I would wake up in the morning and cry because of how I looked. Or how I perceived I looked. These negative thoughts came with me in to my early twenties.

It was only in my late twenties, when I was at healthy weight for the first time in my adult life when I really started to appreciate my body.  That I realised my body was, as the song suggests, the greatest instrument I’d ever own. It took me on long, hilly walks across the wild Scottish countryside. It took me around the country running. My legs travelling vast distances. My lungs and heart working overtime to keep me going. I’d never taken the time to thank my body for all that it allowed me to do, until it was too late.

Until my legs couldn’t move. Until I couldn’t put one foot in front of the other. Until even breathing took so much effort it would bring me to tears. When constant inactivity, coupled with the constant eating and the odd course of steroids would cause me to gain weight, I went back to hating my body. Self-care went from treating myself to a facial to remembering to brush my hair. I would bury my body under baggy clothes, so people couldn’t see me. I didn’t want people to look at me, trying to see the disfigured joints. Trying to see what was wrong with the girl who couldn’t lift her feet off the floor. The one who kept her head down and shuffled. Don’t look at me. Don’t look at this body.

My body had let me down. And only then, when I could no longer use it, did I realise how much I should have enjoyed my body when I had the chance. That I had been given a second chance of appreciating my body.

Now, I have a body that continues to react well to cosentx. A body that is about to take me to my 30th birthday.

I never, in my wildest dreams (or nightmares) imagined that at 30 years old, I would love my body. I never imagined that I would accept my little rolls of tummy fat. That I would wear a bikini and not give a damn how I looked. I never thought I would spend most of my days make up free. That I would no longer worry about what complete random strangers would think seeing me without a full face of make up. Even though they’d never see me again. That I would wear my glasses full time and not bother with contact lenses like I used to because I thought they made me look prettier. That I would actually LOVE myself with glasses. That the thought of wearing contact lenses would be horrifying. I never thought I would appreciate going for a short walk. That even that would be an accomplishment. That walking 100 meters would be great. Way to go body! You the best!

This creaky body has taken me around the world, to places I could only dream of visiting. It has taken me 13.1 miles around the Great North Run half marathon. It has taken me to weddings, to parties. It has taken me on road trips, on last minute trips abroad, without a care in the world. This creaky body has introduced me to me. This creaky body is about to take me on the greatest challenge I have ever tackled…..The London Marathon.

It took aggressive arthritis to teach me to love and appreciate my body. The irony.

I wish I could go back and tell my 14 year old self to love herself just the way she was. To tell her that at (almost) 30 years old, she would be not only content, but happy, with exactly how she is.

So remember, arthritis or chronic illness and all, your body really is the greatest instrument you’ll ever own. Thank if often for achieving the little things we take for granted. Don’t be hard on yourself. Don’t worry about other people. Celebrate every little achievement, no matter how small it may seem. You live your own life, and give yourself a pat on the back. You deserve it.